Messages to others with osteoporosis
The people we talked to offered many different types of advice based on their experiences of having Osteoporosis. Here is what they said:
Managing your condition
- Fractures do heal and you will get better.
- Exercise and be as active as you possibly can.
- Go for regular walks.
- Eat healthily and have a diet which is rich in calcium.
- Take calcium supplements.
- Get plenty of sleep.
- Do not smoke or drink too much alcohol.
- Medication is very important. Make sure you keep taking it.
- If you have side effects from your medication go back to your doctor and have it changed.
- Pay more attention to your footwear. It is important.
- Doctors are there to help you, but always ask questions.
- If you have backache ask your doctor to investigate. Don’t suffer in silence.
- Stay on top of the research evidence.
- Get in touch with a support group. They can give information and support.
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Get plenty of information and support, live healthily and if you have back problems push your...
Based on your experience what would you like to tell them?
Well I think people if they have back problems try to push their doctors a little bit harder than I did initially because I felt that, you know, you’ve been told this and that. Nobody was sure but nobody was actually trying to push you forward because they said, “Well, you know, it might go away” kind of attitude. And I think that is not quite right because, you know, in my case it really just got worse and worse and then everybody was running around, you know, trying to find out what was happening. But I think people should try to push the doctor a little bit maybe for an earlier diagnosis.
And also well just a lifestyle, you know, if you have osteoporosis, you know, try to live healthily. Not, I suppose again not to worry about it a great deal but keep it in mind about what can happen. And, you know, live according to that or get advice according to that because it can be very serious obviously. I mean you know I can break my hips or my thigh bones and, you know, I come in hospital and never come out again kind of thing. So that is. I’m always aware of that you know it is a dangerous condition to all intents and purpose and it is an illness sort of, presumably well I suppose it can be called an illness. And I think also people should try to get as much information about it as possible and as much help as they can get.
Carry out good back care and invest in comfortable footwear.
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Well, based on my own experience no two patients are alike and no two patients have the same problems. And I’ve got four discs crushed, lack of loss of height. Somebody may only have one disc but they need to be aware that the disc below and disc above could become crushed and they need to carry out good back care, you know, and that is important. Bending, stretching is important. The other thing that is so important is if you need to turn you don’t twist your spine, you turn your body. You stand and you turn your feet, you turn your body not turn your spine to look at Mrs Jones behind you. Had some funny looks when I’ve done that but that’s what’s right for me and individuals will learn. Sometimes they learn to their cost but they certainly learn what is right for them and they must be aware of their limitations.
On a personal level all your stiletto heels need to go to the charity shop [laughs]. Comfortable footwear a good pair of shoes when you’re walking, you know. That is important. Supportive lace up shoes or even Velcro shoes but I understand they’re not as supportive as lace ups. I’ve not worn any Velcro shoes yet I my leather lace ups both pairs are still in good condition. I’d like them to stay a little bit longer like that because they’re good shoes. But no seriously it’s, it’s all the it’s mundane things like that. It’s no good trying to totter around on stilettos heels. You will do far, far more damage. You know, my evening shoes have a sensible heel but they’re still very smart sandals and patent shoes. Smart shoes with a heel that I feel comfortable in and confident in wearing. Things like that. Mundane things. Ordinary everyday things that previously you would have taken for granted you, you have to think about. And yeah, it becomes a habit. You do think about it, you know.
Fractures do heal and you will get better.
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All I can say is, “It will get better.” For, even if it’s briefly like me, but it, it will get better. Just, I’m afraid just have to put up with the pain, and it’s going to seem a long, long time, but you’ll get there. And just make the most of everybody fussing over you really. And they’ll say, “Oh, we’ll, we’ll take care of you.” It’s rather nice. But you do put on a bit of weight as well because of everybody looking after you. Good luck. You’ll be all right.
Be as active as you possibly can, have a high calcium diet and get in contact with your local...
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Well, if you’re not, haven’t been diagnosed, then try and get a diagnosis as soon as you can. Follow what you’re told, what the GPs or the consultants tell you. Continue with your treatment. Unless you find it’s got a detrimental effect, and then go straight back and get it changed. But follow and do everything that you are told. If you’re complaining of back pains, try and keep on your feet, try and keep ambulant. I didn’t to start with because I wasn’t diagnosed for a long time. But, knowing what I know now, I would have tried to keep ambulant. I possibly wouldn’t have ended up in a wheelchair for the whole time I did. But certainly stick to your treatment. Make sure you have a high calcium diet. That is a must. I don’t care what anybody says. It’s a must. Even if you don’t like broccoli, which I didn’t, I now, I can eat it and enjoy it now. Because it’s such a high calcium content. And that’s what, that’s what I do, try and keep ambulant. Even if I’m only pottering round here, at least I’m doing some weight-bearing exercise, which is so necessary.
Do you have anything else to add that I haven’t asked?
If you have been diagnosed, find out where your local group is of the National Osteoporosis Society. If you’ve any queries, you want to know anything, ring the osteoporosis helpline. It’s been a boon to me, it really has.
Attitude to life
- Keep positive even when at times it is difficult.
- Accept your limitations.
- Enjoy life.
- Pace yourself and don’t try and do too much.
- Don’t feel sorry for yourself.
- Recognise that as you get older your strength and energy will become limited. It is not just because of osteoporosis.
- Helping others can help you too.
- After a fracture don’t lose your confidence and keep being active.
Its not the end of the world, follow the advice of your doctors and it can be prevented from...
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Well I’ve met one or two like that and they’re usually very depressed, very down in the dumps and I, I mean, I say to them, ‘Well I’ve got it. I’ve had it now all these years and I’m coping.’ But that’s not the way you can deal with it and that.
I feel you’ve got to say, ‘Well we all get something in life and when you look at it this is not to be compared with a lot of things.’ Comparisons are odious but when you think I’m still able to get about. I’m still able to go on holiday abroad, fly, on a ship. I feel that you’ve just got to think it’s not the end of the world. You’re glad that you know you’ve been diagnosed when you have because if you hadn’t been diagnosed now you could have got worse and you can be starting treatment. You can’t be cured but you’ll probably be prevented from getting worse. And, and I feel that’s the thing you’ve got to bear in mind. I know it’s terrible when people are diagnosed. I’m well aware of that but the thing is it’s not the end of the world it’s the beginning of a new phase of your life and you’ve got to make up your mind you’re going to do your best to conquer it.
It may not be 100% as normal but they’ve still got a purpose for living and also they can do. I actually tell people, get involved with the National Society or get involved with something where you can be helping other people. And I will honestly say for what I’ve done to help other people has really helped me. I do believe that. I’ve got it written down somewhere here that if you. It is a blow and doctors have to soften the blow but the thing is they have to be kindly and say, ‘Well we can’t cure you but we’ll try to prevent you getting a lot worse’. And if you can form and exercise when you should and eat the right kind of food and don’t have smoking and excessive drinking and lead what I would call a normal, calculated, careful lifestyle there’s plenty to live for.
Recognise that as you get older your strength and energy will become limited. It is not just...
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I probably lifted something which was too heavy for me on my own but given the circumstances and the need to move as much stuff as I could I just did what I felt able to.
And as I’d said earlier I seemed always to have the strength and energy to do what I wanted to do [laughs]. But this time I pushed it too far.
I suppose the important thing is to recognize that as you get older your strengths, your energy becomes more limited and you have to take recognition of this fact. I remember my old tutor in London who was roughly the same age no, I’m sorry, he was not quite as old, I think he was about seventy five at that stage. And he himself was unwell for a short time and when he came back for more tutorials he said, “One’s body has to be cosseted.” So I think that’s a fair summing up of what’s necessary but it’s a very difficult thing to do. It is a slowing down process and we don’t always realise it.
The other thing that is difficult is one’s parents have got older, relations have got older and they may seem, say things about being old but you never quite understand what it is that they are going through and that you yourself will be going through at some stage. That’s quite hard and it must be quite hard well, it must have been quite hard for them to think that people didn’t fully understand what they were going through. And how does the younger generation fully grasp, fully understand what it is that you’re going through now, what you can do and what you can’t do. Not easy.
No, and some people don’t want to talk about it, can’t talk about it and perhaps there isn’t an adequate language to deal with it.
Remain positive, try to keep your sense of humour and take control of managing your condition.
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I think men who have recently been diagnosed is be prepared for the, the brick wall that you come against which is, I think is, be wary of the depression. I think, it’s going happen. From what I hear from people who I speak to everyday it’s something that’s going to happen. But it, you know, it’s holding onto reality really. It’s putting your osteoporosis in perspective. And, you know once you do that I think you, if you. You know it’s… You have to deal, you know, get on with the cards that have been dealt really but you have to.
I think the biggest advice I can give is to remain positive. Try and keep your sense of humour and keep, you know [laugh] your personality because if you lose those you lose your very existence, your very being. And try not to sort of get down that depression route if you can. It’s just trying, try and keep ahead of it and try and keep, you know, as cheerful as possible. And, depending on your pain levels because, you know, osteoporosis can affect different people. I think you know, you have to learn to master the pain and get advice on that, you know. I would say my biggest thing is to be, you to be the master of your own diseases so you can manage the condition yourself. You have to not rely on doctors to do it for you, you have to. There comes a time when you manage your own osteoporosis and you manage how you deal with it and how you cope with it. You have to take charge because if you don’t the doctors won’t do it. You’re waiting for somebody to do it for you and it doesn’t happen. And once you’ve taken charge then you can move forward and you can be more positive.
Last reviewed June 2017.